DMD Family Folder

Today, to mark Rare Disease Day, we are very pleased to launch the DMD Family Folder.

The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

Our folder is a new resource for the DMD community to help to bridge the gaps in the coordination between medical, social and support services, so that the whole family get the best out of life.

Order your free copy through the online form here. We will also be making the folder available to download from our website soon.

Please use this folder and our website to help you navigate the diagnosis of DMD. You will find lots of information to help you - information about DMD and its causes and how you can best look after your child.

Understanding your child’s condition will empower you and give you back a sense of control. And it will help you lobby for your child and get them the best possible care. We believe in the power of science and medicine to change lives. And of the strength of communities like ours to move mountains.

Together, we can change the future for everyone living with Duchenne Muscular Dystrophy.

If you are a doctor or medical professional and would like to have copies to give to families under your care please get in touch to request some: [email protected]

NOTES FOR EDITORS

What is Duchenne Muscular Dystrophy?Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.

How to donate? Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

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Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

We are proud to share with you our first ever Impact Report, read about the very real impact we are having and the many things we have been working on over the past six years to end Duchenne.
Read more

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